So that is what Tommi’s mum Jess Heard has planned to mark his second “Angelversary” on Monday.

Ms Heard and her partner Ellis Smith will lead the second Run4Tommi at 9am to remember Tommi, who died two years ago from Tay-sachs disease, and to raise funds and awareness for Very Special Kids. Tommi was the only person in Australia at the time with the rare genetic illness which causes a rapid deterioration of nerve cells.

The first Run4Tommi attracted about 200 people.

Ms Heard hopes more will come this year to support the Very Special Kids Foundation.

“Very Special Kids has really helped me,” Ms Heard says.

“They were with me when Tommi was first diagnosed with Tay-sachs disease and they’re still helping me now.

“They help connect families together when you are feeling alone.

“They provide care for parents who have very sick kids but also for bereaved parents.”

Had Tommi lived, he would have turned four last month. Ms Heard says his favourite superhero would have been Superman.

Very Special Kids helps 50 families in Ballarat and about 25 in Bendigo, according to Ms Heard.

The second Run4Tommi starts and finishes at the Lake Wendouree indigenous playground, just off Windmill Drive, and will head off in an anti-clockwise direction.

There will be a barbecue, face painting and prizes for the best dressed.

Participants are also invited to donate a gold coin or buy a hoodie by emailing: jessicaheard85@hotmail.com. For infoirmation, go to www.vsk.org.au

So that is what Tommi’s mum Jess Heard has planned to mark his second “Angelversary” on Monday.

Ms Heard and her partner Ellis Smith will lead the second Run4Tommi at 9am to remember Tommi, who died two years ago from Tay-sachs disease, and to raise funds and awareness for Very Special Kids. Tommi was the only person in Australia at the time with the rare genetic illness which causes a rapid deterioration of nerve cells.

The first Run4Tommi attracted about 200 people.

Ms Heard hopes more will come this year to support the Very Special Kids Foundation.

“Very Special Kids has really helped me,” Ms Heard says.

“They were with me when Tommi was first diagnosed with Tay-sachs disease and they’re still helping me now.

“They help connect families together when you are feeling alone.

“They provide care for parents who have very sick kids but also for bereaved parents.”

Had Tommi lived, he would have turned four last month. Ms Heard says his favourite superhero would have been Superman.

Very Special Kids helps 50 families in Ballarat and about 25 in Bendigo, according to Ms Heard.

The second Run4Tommi starts and finishes at the Lake Wendouree indigenous playground, just off Windmill Drive, and will head off in an anti-clockwise direction.

There will be a barbecue, face painting and prizes for the best dressed.

Participants are also invited to donate a gold coin or buy a hoodie by emailing: jessicaheard85@hotmail.com. For infoirmation, go to www.vsk.org.au